Caring And Living With HIV Infection In Muslim Community Of Bandung, Indonesia.
CARING AND LIVING WITH HIV INFECTION IN MUSLIM COMMUNITY OF
BANDUNG, INDONESIA*
Kusman Ibrahim1, Praneed Songwathana2, Umaporn Boonyasopun3
1
Lecturer Faculty of Nursing, Padjadjaran University, Bandung, Indonesia
Assoaciate Professor, RN, PhD, Faculty of Nursing, Prince of Songkla University, Hat Yai,
Thailand
3
Assistant Professor, RN, PhD, Faculty of Nursing, Prince of Songkla University, Hat Yai,
Thailand
*Manuscript was presented in The 2010 International Nursing Conference “Diversity and
Dynamic of Nursing Science and Art”, Faculty of Nursing, Prince of Songkla University, 7-9
April 2010, Phuket, Thailand
2
INTRODUCTION
The HIV/AIDS is still a major problem and poses continual challenges to many countries,
regardless regions and/or cultural beliefs (Fauci, 1999). Indonesia is a developing country which a
predominantly Muslim. Indonesia has been facing increasing numbers of PLWH since the first case was
identified in 1987. The country is known as having the fastest growing HIV epidemic in Asia (UNAIDS,
UNICEF, WHO, & ADB, 2008). The estimated number of PLWH was reported in 2001 as 93,000 and has
since increased to 270,000 at the end of 2007 (WHO, UNAIDS, & UNICEF, 2008). Unless prevention
programs are effective, it is predicted that the prevalence of HIV would reach 500,000 by the end of
2010 (MoH, 2006) and 1 million by 2015 (AusAID, 2006).
HIV/AIDS has been known for more than two decades and recent pharmacological interventions
have resulted in a better bodily appearance of people living with HIV infection (PLWH). However, living
with HIV/AIDS remains difficult and different from other illness. It is partly due to the stigma and other
related problems attached to the illness. In developed countries, HIV related stigma perhaps is not a big
problem nowadays because most of HIV/AIDS people are able to access anti-retroviral treatment (ART)
and proper health-care services. In contrast, in most low and middle income countries access to the ART
and health-care services are still limited and some people still hold the belief about the disease as a
result of behavioral misconduct or other traditional beliefs (Kalichman & Simbayi, 2004). HIV related
stigma, discrimination, and gender inequalities were also reported as dominant in six Asian countries
include India, China, Thailand, Indonesia, Philippines, and Vietnam (Reidpath, Brijnath, & Chan, 2005).
Stigma as a major barrier in mitigating the impact of HIV epidemic and accessing health care has been
massively reported in the previous studies (Holzemer & Uys, 2004; MacQuarrie, Eckhaus, & Nyblade,
2009). Combating HIV related stigma and discrimination is still a major concern in caring for PLWH
(Furber, Hodgson, Desclaux, & Mukasa, 2004).
Caring for people living with HIV/AIDS is challenging due to the complexity, which need an
interdisciplinary approach. In the context of health care, nurses are usually the largest group of health
care providers who have regular and prolong contact with HIV/AIDS patients. Nurses are expected to
provide high quality of care to the patients regardless their illness (Smit, 2005). The complexity of
HIV/AIDS as a life threatening chronic disease has important implications, not only for individual
affected person, but also for the family and the community. The family and community are probably the
most important social systems that influence coping and adaptation of PLWH. As the problems faced
within the family and community become clearer, there is likely to be a shift in focus in HIV care from
the individual to the family or community based. This approach is seemingly much more acceptable in
the Eastern as well as Muslim culture, in which collectivity of family and community is highly valued.
Understanding the interrelationship among PLWH, their family, and the community in response to
HIV/AIDS and how they care for HIV-infected persons within their cultural context is crucial to develop
appropriate strategies in caring for people living with HIV infection.
Studies on caring for people living with HIV infection have been extensively published in the
nursing literature. A number of the studies have been focused on the investigation of the impact of
HIV/AIDS onto physical and psychosocial conditions of PLWH as well as on the experiences of nurses in
caring for those patients. Culture is acknowledged as a major determinant in caring for HIV/AIDS people.
However, most studies on HIV/AIDS were conducted in the Western and/or non-Muslim cultural
context. There is little known about how PLWH live with the illness and how they experience caring in a
Muslim cultural context, in particular in Indonesia.
METHODS
This study utilizes a focused ethnographic approach to discover, describe, and
systematically analyze the emic care conceptions within a specific cultural and environmental
context. Leininger (1985) stated that the focused-ethnography or ethnonursing method was
designed to tease out complex, elusive, and largely unknown forms of human care from the
participants’ perspectives. This approach enabled the researcher to develop insight into
phenomenon of caring for persons living with HIV infection in the Muslim community of
Bandung, Indonesia.
To gain trust of informants and allow contextual understanding of the phenomenon under
investigation, the first researcher who is an Indonesian had immersed in the naturalistic setting.
The NGOs’ staffs working for HIV/AIDS served as gatekeepers facilitating access to
participants. Human relation skills and fluency speaking in both Indonesian and Sundanese
language (local language) of the first researcher has greatly facilitated winning the trust of the
informants.
Twelve PLWH were purposively selected to participate in this study. Data were collected
through participant observation and interviewing. In addition, eight family caregivers and eight
community members were also interviewed. The researcher interviewed all informants in either
Indonesian or Sundanese language in their home, which each interview was audiotaped and
lasting 45 to 60 minutes. The initial question was started with broad descriptive question such as
“How is your daily life going?” Structure and contrast questions were asked to explore more
deeply toward the caring for themselves included beliefs and values perceived by PLWH. During
the interview, the researcher encouraged the informants to clarify and elaborate the details of
their experience by using probes or focused questions such as “What does it mean to you?”, or
“What does make you think like that?” The researcher kept interviewing informants until
reaching the stage which no new information emerged by conducting additional interviews. The
information was considered as saturation when no more new information could be elucidated by
informants. In another word, sufficient data was developed and reach saturation stage.
Data were analyzed on daily basis. Initially data were written or transcribed in Indonesian
language. Informants who spoke Sundanese (local language) were recorded and transcribed into
Indonesian language. Furthermore, the researcher translated into English and asked an Indonesia
English teacher to verify the accuracy of meaning and context of certain terms or phrases. The
process of data analysis in this study involved four steps as recommended by Leininger (2002)
included (1) collecting, describing, and documenting raw data, (2) identification and
categorization of descriptors and components, (3) identification pattern and contextual analysis,
(4) formulation themes and research findings. The findings of this study were evaluated by the
process of credibility, confirmability, and transferability as suggested by Lincoln and Guba
(1985).
RESULTS
Three themes emerged from the data related to Muslim cultural aspects of caring for
PLWH and living with HIV/IDS. They were: (1) understanding meaning of illness, (2) beliefs
and meanings related to caring, and (3) practices of caring. These themes can be described as
follows:
1. Understanding the meaning of illness
After learning from the reality that they has been infected and the viruses presented in their
body, the informants develop an understanding to draw the meanings from being with
HIV/AIDS. There are two sub-sub-themes emerged under the meaning of being with HIV/AIDS
namely the illness as a consequence and the illness as a test.
1.1 Illness as a consequence
The informants who has story of engaging with risk behaviors, they understood that the
present illness could be a consequence from their previous behaviors. An informant said:
Recently I am realize that it is a consequence of my previous uncontrolled behaviors of being
drugs user…some of my friends thought too much about this until they got frustration…to me, I
believe in the cause and effect law, if we did bad things we will get bad consequences and
reversely if did good we will get good… (K6)
1.2 Illness as a test of patience
The informants who got infected from their husband, they preferred to view the illness as a
test from God. As an informant expressed:
I think it is a test from God that must be received with patience… and when I heard that my
daughter’s test result was negative…it was surprising …unbelievable...and my belief became
stronger that perhaps it is a reward from God to me who has been receiving the test with
hardiness…(K2)
2.
Beliefs and meanings related to caring
The informants’ expression regarding the beliefs and values related to caring can be
classified into six sub-themes can be explained as follows:
2.1 Caring is doing good deeds
Caring was viewed by the informants as doing good deeds or practicing kindness for other
people. Sick person was viewed as a physically weakness and emotionally labile. Helping those
who suffer from illness was categorized as a noble deed. As the informants said:
I think I have saturated already of being a junkie for many years…now I want to turn my life to
be more care for myself by doing good things…hopefully God will apologize my previous sins
(K10).
…we must avoid HIV as an illness…yet we should not neglect the one who infected by
HIV…because caring for those who suffering are a noble deed according to our beliefs… (G19)
2.2 Obligation of human being
The informants believe that caring for sick person as obligation of human being. If in a
community, none of them care for the sick, the whole community members will get sin.
However, mother was viewed as the most responsible to care for family members. The
informants said:
…in our society we have a statement that whatever like, bad or good, once he is my son, he
r emain my son forever. So if he was neglected…people will look at me as his mother…perhaps
they thought I have no responsibility to care for him… (G1)
As a believer, I believe that care is an obligation of every single human being, at least being able
to care for themselves…if none caring each other…I imagined people will suspicious and
fighting each other (K6)
2.3 Sincere
According to the informants’ point of view, caring can be mean sincere that is doing
something for someone else without any reward expectation from the one by the end of
relationship. Informant of care givers and health providers stressed this point as motivation of
their willingness to care for AIDS persons. The informants said:
Although it is quite fearful at the first time care for those patients…then when I look the progress
is good…I satisfied with I have done for those…so if we sincerely (ikhlas) cared for them, it can
reduce our stress burden as a result of the fearful illness…(G19)
I think I have cared for her in an optimum level that I can performed…now she has gone (die)…I
have genuinely done it for her best… I don’t know whether or not she accepted…I only hope that
God who reward me in the hereafter (G2)
2.4 Empathy
The informants from health providers and family care givers highlighted ‘empathy’ or
showing deep attention and understanding to people with HIV/AIDS as an important aspect of
caring for those people. The informants said:
Actually if we are really understand their feelings and imagine if it is happened to us or our
family members…we could avoid caring for them (G14)
I think people who expelled away person with AIDS as I showed on TV, they don’t care of
humanity…how if it was happened to their son or daughter, it is so pity…they should not do like
that (G8)
2.5 Support, motivation, and encouragement
The informants learned that being HIV infected is a stressful experience, and the issues
surrounding the illness looked devastatingly their hope to the future life. Therefore, support,
motivation, and encouragement were needed as an integrated part of caring for them. The
informants said:
I was really stress and fear of rejected by my family when I knew that I am infected, that way I
did not disclose my status to my family for a long time until I delivered…fortunately my parents
understood and care for me…they supported me and encouraged me to be patient, and accepted
me as it is (K8)
Sometime I thought I don’t want to live longer with the present burden of being HIV
infected…my wife left me and looked to have fair with another guy…I have stopped taking ARV
for a week, yet my mother was really care very much to me, she supported me and encouraged
me to continue taking ARV…(K10)
2.6
Comfort
The informants expressed ‘comfort’ or convenience as associated with caring for PLWHA
both in their home and in the health care setting. As the informants said:
Our HIV clinic here has recorded dramatically increasing of visitors in the recent years. Some of
them came from far away which actually they can came to the nearest HIV clinic with their
residential, when I asked them why you don’t come to the nearest clinic instead of coming here,
they said that they felt comfort here…not because of our facilities, yet in here they can
communicate each other, they shared experiences though just in short time…and as health care
providers, we must have heart contact with them, without that matter it would difficult to gain
trust from them (G9)
…her emotion has been unstable since she knew her status of HIV positive and quite often of
getting sick. As her mother who cared her much, I tried to console and entertain her with advices
and nice words in other to her felt comfort. I hope it can relieve her stress (G5)
3. Practices of caring
Several ways were identified to express the practices of caring for PLWH among the
informants. They were including prayer, reciting Qur’an, keeping efforts in health seeking,
visiting the sick, offering emotional and material supports, and avoiding talking bad things of the
sick or died person. These were described as follows:
3.1 Prayer
Prayer is the main way to communicate with God. There were two types of prayer that
practiced by the informants: ritual prayer (Shalat) and non-ritual prayer (du’a). The informants
realized that the human being have limitations, through prayers they asked help and mercy from
God to overcome their problem. The mistakes, bad things, or sins that had been done in the
previous time were considered as a psychological burden for informants. By doing prayers, they
believed that God may apologize their mistakes and release the burden. The informants said:
Although this illness is incurable, we should not despair because the final decision is on God’s
hand, so I do pray all the time and in particular midnight prayer (tahajud) to ask for a better life
for me and my son (G1)
I strongly believe that God will help me, though the doctor said that this illness can’t be cure
completely, if God will to cure… it will be cured and I will be healthy, so just pray to God,
asking for healing and healthy (K2)
3.2 Reciting Qur’an
The informants believed that reciting Qur’an would help the sick to remember God and
gain power from Him. In a particular condition where the sick person seemed to have a little
hope to be recovered, or in dying process, family members or relatives were often present
surrounding the sick for reciting Qur’an. If family members could not do so for some reasons, a
religious leader may be invited to lead the prayer and recite Qur’an. The informants said:
… as he arrived at home from the hospital, he was unable to speak…when I asked him… he did
not respond, his eyes’ look seemed empty, I got feeling that he would not longer life, I called my
other children and neighbors to recite Qur’an and pray here… until he release his final birth
(G8)
Although my relatives and neighbors seemed to be scare when they knew my son died because of
having AIDS, fortunately there was a group of religious persons who assisted us to care the
death body, offered prayer, and recited Qur’an until the seventh days of his death (G6)
3.3 Keeping efforts in health seeking
Although the informants believed that God has power to cure the illness through His
miracle, the only pray was considered not enough to facilitate the God will. Prayers and optimum
efforts must be done together to achieve the goal of healing. In term of efforts, in accord to the
belief of Islam, the informants sought health assistances from both traditional and modern health
care services. The types of traditional care that used by informants in this study were vary
including taking a mix herbs (jamu), visiting natural hot spring, immunity booster supplements,
urine therapy, massage, and religious based folk healers. Whereas for modern health care, they
used community health centers, private doctor or midwife practices, and public hospitals. The
informants said:
I believe that every single illness has its own medicines… as was told by our Prophet (PBUH),
yet we have to keep effort to search the best medicines to heal the illness. Right now, I have been
trying to use urine therapy as complement of taking ARV… the result is good. My body weight
increase 2 kg within a month. Looks, my dress seems to be not fit again with my body (K11).
I was fussy for some time when I saw my daughter reluctant to be taken to health center. I said, it
is not possible to get cure if just stay at home. Don’t wait until your condition becoming worse, it
is too late… if you go to see the doctor… as soon as the doctor know the illness… the better
treatment will be given to you… (G5)
3.4 Visiting the sick
Visiting a community member or a relative who was being sick was considered as a form
of caring practice by the informants. The visit was conducted either in hospital while the sick
being hospitalized or at the sick’s home. The informants said:
I think because I have a good relationship with people here and most people here are still having
family relationships, as I was being sick, some of them came to visit me and asked about my
health progress… even friends who came from far away… (K6)
People here are quite nice… when I was being admitted in the hospital, they came to visit me.
Although I used to be known as a drug user, they considered my mother and my late father as a
good community member, so they wished to help us… (K1)
3.5 Offering emotional and material supports
The informants acknowledged the emotional as well as material support provided by their
family, relatives, friends, and communities as a form of their caring to the informants. NGO was
viewed as part of community resources which was very helpful in providing support toward
PLWHA. The informants said:
You know…, since my husband and my mother passed away, I have nothing… fortunately my
oldest sister and my niece support me very much. They allowed me to live here and took me to
get test and brought me to traditional health care… I also got help from health cadre, NGO, and
community persons here to arrange the insurance health for the poor in order to get access to
hospital care… (K2)
Although I am unable to earn money due to being sick, Alhamdulillah (praise to God) some
people who visit here offered an envelope (contained money)… and my sister also supports me if
I and my wife need for daily basics… (K6)
3.6 Avoiding talking bad things of the sick or died person
The informants viewed talking or gossiping the bad things of someone else must be
avoided if they care for the one. It is plausible because if the gossip spread out will result
discomfort feelings of one who became an object of the talk. The informants said:
… you know, this illness is considered as a dirty illness linked with bad behaviors, so the
doctors, the nurses, and the counselor who care me remind me many times not to talk to anyone,
even my brothers about this illness. Yeah, because I think talking about the bad things of
someone else, it supposed to be avoided… (K10)
I think why persons who having AIDS seemed to feel embarrass with community people, because
of the psychological burden as result of their previous behaviors. Actually our religion thought
us not to do talking or gossiping of bad behaviors of other people, even someone who already
passed away… (G23)
DISCUSSION
Having HIV infection was viewed as a reality that had happened and could not be avoided,
unless being accepted with care. Care, in the informants’ view covered utilizing all beliefs,
values, and efforts to maintain health and well-being while being with HIV infection. The theme
“understanding the meaning of illness as a consequence and as a test of patience” reflects the
belief of Islamic beliefs, which all effects were resulted by a cause and illness, suffering, and
hardship as a test of patience. Previous studies documented the influence of faith in believing in
God in dealing with HIV/AIDS impact (Cotton, et al., 2006; Maman, Cathcart, Burkhardt,
Ombac, & Behets, 2009).
Although the reality of being an HIV-infected person could not be avoided, it should not
lead to frustration or hopeless. The theme “beliefs and meaning related to caring“ which
consisted of six sub-themes; caring is doing good deeds, obligation of human being, sincere,
empathy, support motivation and encouragement, and providing comfort indicates the
universality meaning of caring as also found in the other culture. In this context caring meant
utilizing all of the endeavors while supplication to God for the best outcomes as
acknowledgment of human weakness without any help from God. Since God, the Creator and
Lord of all beings, is the central belief in Islam, gaining His blessing was viewed as essential in
Muslim life. The theme of doing good deeds which aimed to gain blessing of God mirrored the
firm belief of the informants in God. Kutty (2002) stated that blessing in Islam means mercy of
God which indicates His love and eternal salvation for the blessed ones. Islam is essentially
surrendering self totally to God by dedicating everything to Him. Thus, every single utterance or
deed that is begun in the Name of Allah and with the intention of seeking the pleasure of Allah is
considered blessed; likewise, each and every matter that is not begun in the Name of Allah is
considered disfigured. Doing good deeds and worship God is a mean to gain blessing of God.
Some examples of doing good deeds that are recommended by Islamic teaching were patience,
control over passions and desires, control over bad temper, prayer regularly, visiting the mosque,
reading the Qur’an, family gathering, concern for the community matters, etc..
Living with HIV infection is vulnerable to other co-infection diseases since the body’s
immunity was not well functioning. The nature of HIV illness has changed from acute-fatalistic
disease to chronic-manageable disease due to the advancement of the antiretroviral therapy. This
required PLWH and surrounding people develop caring practices to maintain their health and
well-being. Previous studies demonstrate various strategies were developed and practiced by
PLWH to maintain health. Eller et al. (2005) found six categories of self-care practiced by
PLWH; these were practicing complementary/ alternative therapies, talking to others, using
distraction techniques, using antidepressants, engaging in physical activities, and using
denial/avoidant coping. Gaskins and Lyons (2000) identified three categories of self-care
practiced by rural PLWH; they are dealing with rural issues, staying healthy, and the way of
taking care of oneself with HIV. Both studies were conducted in the secularized western cultural
setting in which the common people are less concerned about religion in their life.
Prayer (shalat), reciting Qur’an was selected as care practice to maintain connection with
God as the source of power. The informants were indicated to utilize Islamic religious practices
as a care modality in dealing with HIV-related problems. Utilizing religious practice, particularly
prayer, as way of coping with HIV/AIDS has been documented in the previous studies (Corless
et al., 2002; Cotton et al., 2006; Shambley-Ebron & Boyle, 2006). In the Muslim perspective,
prayer is an obligation and has become an integral part of Muslim life. Therefore, Islam
encourages Muslims to be patient and pray consistently while facing illness or when suffering
(Athar, 1999; Rassool, 2000).
Keeping efforts in health seeking modern medicine and health care professional assistances
remain to become the main option for most PLWH to heal their illness or relieve the symptoms.
Gaskins and Lyons (2000) reported that PLWH rely on physicians in the HIV clinic for their
treatment though some of them were bothered by feeling shame due to that some people would
then know they attended an HIV clinic. In addition, Irwanto and Moeliono (2007) reported that
of some 270 surveyed PLWH; of which about two-third visited health care services to obtain
ARV, VCT, and nursing care, several of them encountered barriers such as feelings of fear to be
known by relatives or friends, or fear of rejection by health care providers due to their HIV
status.
Comforting PLWH by visiting the sick and offering emotional and material support may
also be provided by the family, the health provider, and the community as a mode of care for the
PLWH. From the cultural context of the participants, providing comfort symbolizes expression
of love and affection that exists within familial, professional, and community relationships. It is
also supported by religious beliefs that teach them how to behave toward the sick person. Yaqut
(2007) asserted that honoring the disabled as well as the sick persons, meeting their needs and
comforting them is encouraged by Islam for the purpose of relieving their suffering. The Prophet
Muhammad (PBUH) used to visit the sick, pray for them, and consoled them, instilling
confidence in their souls, and covering their hearts and faces with happiness and joy. Family
caregiver provided comfort and emotional support for PLWH, as documented in a recent study
(Aga et al., 2009; Maneesriwongul et al., 2004).
Avoiding talking bad things of the sick or died person was viewed as a way of care for
dying and death persons. This belief can be illuminated by the Islamic perspectives toward death
and dying. In Islam, life is a journey through the world, and death is another journey through a
spiritual world to meet God (Athar, 1999; Rassool, 2000). The earth is described as a resting
place for the purpose of worshiping God and doing good deeds. Muslims value much on sanctity
of life meaning that all life is sacred and a trust from God, because it originates with God and
returns to God (Sheikh, 1998). Hedayat (2006) stated; Muslims traditionally defined death as
when the body grew cold after cessation of cardiac activity, despite it was based on more
empirical observations than on prophetic command. Attending to a sick person and/or the funeral
procession is highly recommended in Islam. Burial of the dead is a communal responsibility of
the Muslim community.
In the dying moments, Muslim visitors recite or listen to the recitation of certain key verses
of Qur’an, commonly “Surah Yasiin”. The rituals surrounding the time of death are commonly
consisted of making a will and testament, seeking forgiveness, reciting the Qur’an, reiterating
key beliefs (profession of faith by saying “La ilaha illa Allah wa-Muhammad rasul Allah” (there
is no god but Allah (God) and Muhammad is the prophet of God), facing Makkah at the time of
the death or head turn to the right if not practical, closing the eyelids, closing and/or binding the
jaw, and the body must be ritually washed, anointed, shrouded, prayed over, and be buried within
24 hours. Mourning in a loud voice and crying in a high pitch was prohibited by the Prophet
Muhammad (PBUH) (Sajid, 2003). It is a Muslim’s duty to offer condolences, comfort and
sympathy to the family and the relatives of the deceased. This strengthens the relationships
within the Muslim community.
CONCLUSSION AND RECOMMENDATION
This study highlighted the significant points of caring for and living with HIV/AIDS which
reflected cultural beliefs of Muslim community. Understanding meaning of illness which
consisted of illness as a consequence and as a test of patients indicated the beliefs of law of cause
and effect as underlined by natural law and religious beliefs. Beliefs and meanings related to
caring which consisted of caring is doing good deeds, obligation of human being, sincere,
empathy, support, motivation and encouragement, and comfort reflected the universality of
meaning of caring. Prayer, reciting Qur’an, keeping efforts in health seeking, visiting the sick,
offering emotional and material supports, and avoiding talking bad things of the sick or died
person were also reflected Islamic beliefs and practices related to caring practices. The results of
the study suggest nurses or other health care provider to consider and incorporate the beliefs,
values, and practices related to caring based on the cultural and religious beliefs and practice in
order to provide holistic and comprehensive nursing care particularly for PLWH and their
family.
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needs-in-islam/
http://makkah.wordpress.com/2007/06/14/caring-for-people-with-special-
BANDUNG, INDONESIA*
Kusman Ibrahim1, Praneed Songwathana2, Umaporn Boonyasopun3
1
Lecturer Faculty of Nursing, Padjadjaran University, Bandung, Indonesia
Assoaciate Professor, RN, PhD, Faculty of Nursing, Prince of Songkla University, Hat Yai,
Thailand
3
Assistant Professor, RN, PhD, Faculty of Nursing, Prince of Songkla University, Hat Yai,
Thailand
*Manuscript was presented in The 2010 International Nursing Conference “Diversity and
Dynamic of Nursing Science and Art”, Faculty of Nursing, Prince of Songkla University, 7-9
April 2010, Phuket, Thailand
2
INTRODUCTION
The HIV/AIDS is still a major problem and poses continual challenges to many countries,
regardless regions and/or cultural beliefs (Fauci, 1999). Indonesia is a developing country which a
predominantly Muslim. Indonesia has been facing increasing numbers of PLWH since the first case was
identified in 1987. The country is known as having the fastest growing HIV epidemic in Asia (UNAIDS,
UNICEF, WHO, & ADB, 2008). The estimated number of PLWH was reported in 2001 as 93,000 and has
since increased to 270,000 at the end of 2007 (WHO, UNAIDS, & UNICEF, 2008). Unless prevention
programs are effective, it is predicted that the prevalence of HIV would reach 500,000 by the end of
2010 (MoH, 2006) and 1 million by 2015 (AusAID, 2006).
HIV/AIDS has been known for more than two decades and recent pharmacological interventions
have resulted in a better bodily appearance of people living with HIV infection (PLWH). However, living
with HIV/AIDS remains difficult and different from other illness. It is partly due to the stigma and other
related problems attached to the illness. In developed countries, HIV related stigma perhaps is not a big
problem nowadays because most of HIV/AIDS people are able to access anti-retroviral treatment (ART)
and proper health-care services. In contrast, in most low and middle income countries access to the ART
and health-care services are still limited and some people still hold the belief about the disease as a
result of behavioral misconduct or other traditional beliefs (Kalichman & Simbayi, 2004). HIV related
stigma, discrimination, and gender inequalities were also reported as dominant in six Asian countries
include India, China, Thailand, Indonesia, Philippines, and Vietnam (Reidpath, Brijnath, & Chan, 2005).
Stigma as a major barrier in mitigating the impact of HIV epidemic and accessing health care has been
massively reported in the previous studies (Holzemer & Uys, 2004; MacQuarrie, Eckhaus, & Nyblade,
2009). Combating HIV related stigma and discrimination is still a major concern in caring for PLWH
(Furber, Hodgson, Desclaux, & Mukasa, 2004).
Caring for people living with HIV/AIDS is challenging due to the complexity, which need an
interdisciplinary approach. In the context of health care, nurses are usually the largest group of health
care providers who have regular and prolong contact with HIV/AIDS patients. Nurses are expected to
provide high quality of care to the patients regardless their illness (Smit, 2005). The complexity of
HIV/AIDS as a life threatening chronic disease has important implications, not only for individual
affected person, but also for the family and the community. The family and community are probably the
most important social systems that influence coping and adaptation of PLWH. As the problems faced
within the family and community become clearer, there is likely to be a shift in focus in HIV care from
the individual to the family or community based. This approach is seemingly much more acceptable in
the Eastern as well as Muslim culture, in which collectivity of family and community is highly valued.
Understanding the interrelationship among PLWH, their family, and the community in response to
HIV/AIDS and how they care for HIV-infected persons within their cultural context is crucial to develop
appropriate strategies in caring for people living with HIV infection.
Studies on caring for people living with HIV infection have been extensively published in the
nursing literature. A number of the studies have been focused on the investigation of the impact of
HIV/AIDS onto physical and psychosocial conditions of PLWH as well as on the experiences of nurses in
caring for those patients. Culture is acknowledged as a major determinant in caring for HIV/AIDS people.
However, most studies on HIV/AIDS were conducted in the Western and/or non-Muslim cultural
context. There is little known about how PLWH live with the illness and how they experience caring in a
Muslim cultural context, in particular in Indonesia.
METHODS
This study utilizes a focused ethnographic approach to discover, describe, and
systematically analyze the emic care conceptions within a specific cultural and environmental
context. Leininger (1985) stated that the focused-ethnography or ethnonursing method was
designed to tease out complex, elusive, and largely unknown forms of human care from the
participants’ perspectives. This approach enabled the researcher to develop insight into
phenomenon of caring for persons living with HIV infection in the Muslim community of
Bandung, Indonesia.
To gain trust of informants and allow contextual understanding of the phenomenon under
investigation, the first researcher who is an Indonesian had immersed in the naturalistic setting.
The NGOs’ staffs working for HIV/AIDS served as gatekeepers facilitating access to
participants. Human relation skills and fluency speaking in both Indonesian and Sundanese
language (local language) of the first researcher has greatly facilitated winning the trust of the
informants.
Twelve PLWH were purposively selected to participate in this study. Data were collected
through participant observation and interviewing. In addition, eight family caregivers and eight
community members were also interviewed. The researcher interviewed all informants in either
Indonesian or Sundanese language in their home, which each interview was audiotaped and
lasting 45 to 60 minutes. The initial question was started with broad descriptive question such as
“How is your daily life going?” Structure and contrast questions were asked to explore more
deeply toward the caring for themselves included beliefs and values perceived by PLWH. During
the interview, the researcher encouraged the informants to clarify and elaborate the details of
their experience by using probes or focused questions such as “What does it mean to you?”, or
“What does make you think like that?” The researcher kept interviewing informants until
reaching the stage which no new information emerged by conducting additional interviews. The
information was considered as saturation when no more new information could be elucidated by
informants. In another word, sufficient data was developed and reach saturation stage.
Data were analyzed on daily basis. Initially data were written or transcribed in Indonesian
language. Informants who spoke Sundanese (local language) were recorded and transcribed into
Indonesian language. Furthermore, the researcher translated into English and asked an Indonesia
English teacher to verify the accuracy of meaning and context of certain terms or phrases. The
process of data analysis in this study involved four steps as recommended by Leininger (2002)
included (1) collecting, describing, and documenting raw data, (2) identification and
categorization of descriptors and components, (3) identification pattern and contextual analysis,
(4) formulation themes and research findings. The findings of this study were evaluated by the
process of credibility, confirmability, and transferability as suggested by Lincoln and Guba
(1985).
RESULTS
Three themes emerged from the data related to Muslim cultural aspects of caring for
PLWH and living with HIV/IDS. They were: (1) understanding meaning of illness, (2) beliefs
and meanings related to caring, and (3) practices of caring. These themes can be described as
follows:
1. Understanding the meaning of illness
After learning from the reality that they has been infected and the viruses presented in their
body, the informants develop an understanding to draw the meanings from being with
HIV/AIDS. There are two sub-sub-themes emerged under the meaning of being with HIV/AIDS
namely the illness as a consequence and the illness as a test.
1.1 Illness as a consequence
The informants who has story of engaging with risk behaviors, they understood that the
present illness could be a consequence from their previous behaviors. An informant said:
Recently I am realize that it is a consequence of my previous uncontrolled behaviors of being
drugs user…some of my friends thought too much about this until they got frustration…to me, I
believe in the cause and effect law, if we did bad things we will get bad consequences and
reversely if did good we will get good… (K6)
1.2 Illness as a test of patience
The informants who got infected from their husband, they preferred to view the illness as a
test from God. As an informant expressed:
I think it is a test from God that must be received with patience… and when I heard that my
daughter’s test result was negative…it was surprising …unbelievable...and my belief became
stronger that perhaps it is a reward from God to me who has been receiving the test with
hardiness…(K2)
2.
Beliefs and meanings related to caring
The informants’ expression regarding the beliefs and values related to caring can be
classified into six sub-themes can be explained as follows:
2.1 Caring is doing good deeds
Caring was viewed by the informants as doing good deeds or practicing kindness for other
people. Sick person was viewed as a physically weakness and emotionally labile. Helping those
who suffer from illness was categorized as a noble deed. As the informants said:
I think I have saturated already of being a junkie for many years…now I want to turn my life to
be more care for myself by doing good things…hopefully God will apologize my previous sins
(K10).
…we must avoid HIV as an illness…yet we should not neglect the one who infected by
HIV…because caring for those who suffering are a noble deed according to our beliefs… (G19)
2.2 Obligation of human being
The informants believe that caring for sick person as obligation of human being. If in a
community, none of them care for the sick, the whole community members will get sin.
However, mother was viewed as the most responsible to care for family members. The
informants said:
…in our society we have a statement that whatever like, bad or good, once he is my son, he
r emain my son forever. So if he was neglected…people will look at me as his mother…perhaps
they thought I have no responsibility to care for him… (G1)
As a believer, I believe that care is an obligation of every single human being, at least being able
to care for themselves…if none caring each other…I imagined people will suspicious and
fighting each other (K6)
2.3 Sincere
According to the informants’ point of view, caring can be mean sincere that is doing
something for someone else without any reward expectation from the one by the end of
relationship. Informant of care givers and health providers stressed this point as motivation of
their willingness to care for AIDS persons. The informants said:
Although it is quite fearful at the first time care for those patients…then when I look the progress
is good…I satisfied with I have done for those…so if we sincerely (ikhlas) cared for them, it can
reduce our stress burden as a result of the fearful illness…(G19)
I think I have cared for her in an optimum level that I can performed…now she has gone (die)…I
have genuinely done it for her best… I don’t know whether or not she accepted…I only hope that
God who reward me in the hereafter (G2)
2.4 Empathy
The informants from health providers and family care givers highlighted ‘empathy’ or
showing deep attention and understanding to people with HIV/AIDS as an important aspect of
caring for those people. The informants said:
Actually if we are really understand their feelings and imagine if it is happened to us or our
family members…we could avoid caring for them (G14)
I think people who expelled away person with AIDS as I showed on TV, they don’t care of
humanity…how if it was happened to their son or daughter, it is so pity…they should not do like
that (G8)
2.5 Support, motivation, and encouragement
The informants learned that being HIV infected is a stressful experience, and the issues
surrounding the illness looked devastatingly their hope to the future life. Therefore, support,
motivation, and encouragement were needed as an integrated part of caring for them. The
informants said:
I was really stress and fear of rejected by my family when I knew that I am infected, that way I
did not disclose my status to my family for a long time until I delivered…fortunately my parents
understood and care for me…they supported me and encouraged me to be patient, and accepted
me as it is (K8)
Sometime I thought I don’t want to live longer with the present burden of being HIV
infected…my wife left me and looked to have fair with another guy…I have stopped taking ARV
for a week, yet my mother was really care very much to me, she supported me and encouraged
me to continue taking ARV…(K10)
2.6
Comfort
The informants expressed ‘comfort’ or convenience as associated with caring for PLWHA
both in their home and in the health care setting. As the informants said:
Our HIV clinic here has recorded dramatically increasing of visitors in the recent years. Some of
them came from far away which actually they can came to the nearest HIV clinic with their
residential, when I asked them why you don’t come to the nearest clinic instead of coming here,
they said that they felt comfort here…not because of our facilities, yet in here they can
communicate each other, they shared experiences though just in short time…and as health care
providers, we must have heart contact with them, without that matter it would difficult to gain
trust from them (G9)
…her emotion has been unstable since she knew her status of HIV positive and quite often of
getting sick. As her mother who cared her much, I tried to console and entertain her with advices
and nice words in other to her felt comfort. I hope it can relieve her stress (G5)
3. Practices of caring
Several ways were identified to express the practices of caring for PLWH among the
informants. They were including prayer, reciting Qur’an, keeping efforts in health seeking,
visiting the sick, offering emotional and material supports, and avoiding talking bad things of the
sick or died person. These were described as follows:
3.1 Prayer
Prayer is the main way to communicate with God. There were two types of prayer that
practiced by the informants: ritual prayer (Shalat) and non-ritual prayer (du’a). The informants
realized that the human being have limitations, through prayers they asked help and mercy from
God to overcome their problem. The mistakes, bad things, or sins that had been done in the
previous time were considered as a psychological burden for informants. By doing prayers, they
believed that God may apologize their mistakes and release the burden. The informants said:
Although this illness is incurable, we should not despair because the final decision is on God’s
hand, so I do pray all the time and in particular midnight prayer (tahajud) to ask for a better life
for me and my son (G1)
I strongly believe that God will help me, though the doctor said that this illness can’t be cure
completely, if God will to cure… it will be cured and I will be healthy, so just pray to God,
asking for healing and healthy (K2)
3.2 Reciting Qur’an
The informants believed that reciting Qur’an would help the sick to remember God and
gain power from Him. In a particular condition where the sick person seemed to have a little
hope to be recovered, or in dying process, family members or relatives were often present
surrounding the sick for reciting Qur’an. If family members could not do so for some reasons, a
religious leader may be invited to lead the prayer and recite Qur’an. The informants said:
… as he arrived at home from the hospital, he was unable to speak…when I asked him… he did
not respond, his eyes’ look seemed empty, I got feeling that he would not longer life, I called my
other children and neighbors to recite Qur’an and pray here… until he release his final birth
(G8)
Although my relatives and neighbors seemed to be scare when they knew my son died because of
having AIDS, fortunately there was a group of religious persons who assisted us to care the
death body, offered prayer, and recited Qur’an until the seventh days of his death (G6)
3.3 Keeping efforts in health seeking
Although the informants believed that God has power to cure the illness through His
miracle, the only pray was considered not enough to facilitate the God will. Prayers and optimum
efforts must be done together to achieve the goal of healing. In term of efforts, in accord to the
belief of Islam, the informants sought health assistances from both traditional and modern health
care services. The types of traditional care that used by informants in this study were vary
including taking a mix herbs (jamu), visiting natural hot spring, immunity booster supplements,
urine therapy, massage, and religious based folk healers. Whereas for modern health care, they
used community health centers, private doctor or midwife practices, and public hospitals. The
informants said:
I believe that every single illness has its own medicines… as was told by our Prophet (PBUH),
yet we have to keep effort to search the best medicines to heal the illness. Right now, I have been
trying to use urine therapy as complement of taking ARV… the result is good. My body weight
increase 2 kg within a month. Looks, my dress seems to be not fit again with my body (K11).
I was fussy for some time when I saw my daughter reluctant to be taken to health center. I said, it
is not possible to get cure if just stay at home. Don’t wait until your condition becoming worse, it
is too late… if you go to see the doctor… as soon as the doctor know the illness… the better
treatment will be given to you… (G5)
3.4 Visiting the sick
Visiting a community member or a relative who was being sick was considered as a form
of caring practice by the informants. The visit was conducted either in hospital while the sick
being hospitalized or at the sick’s home. The informants said:
I think because I have a good relationship with people here and most people here are still having
family relationships, as I was being sick, some of them came to visit me and asked about my
health progress… even friends who came from far away… (K6)
People here are quite nice… when I was being admitted in the hospital, they came to visit me.
Although I used to be known as a drug user, they considered my mother and my late father as a
good community member, so they wished to help us… (K1)
3.5 Offering emotional and material supports
The informants acknowledged the emotional as well as material support provided by their
family, relatives, friends, and communities as a form of their caring to the informants. NGO was
viewed as part of community resources which was very helpful in providing support toward
PLWHA. The informants said:
You know…, since my husband and my mother passed away, I have nothing… fortunately my
oldest sister and my niece support me very much. They allowed me to live here and took me to
get test and brought me to traditional health care… I also got help from health cadre, NGO, and
community persons here to arrange the insurance health for the poor in order to get access to
hospital care… (K2)
Although I am unable to earn money due to being sick, Alhamdulillah (praise to God) some
people who visit here offered an envelope (contained money)… and my sister also supports me if
I and my wife need for daily basics… (K6)
3.6 Avoiding talking bad things of the sick or died person
The informants viewed talking or gossiping the bad things of someone else must be
avoided if they care for the one. It is plausible because if the gossip spread out will result
discomfort feelings of one who became an object of the talk. The informants said:
… you know, this illness is considered as a dirty illness linked with bad behaviors, so the
doctors, the nurses, and the counselor who care me remind me many times not to talk to anyone,
even my brothers about this illness. Yeah, because I think talking about the bad things of
someone else, it supposed to be avoided… (K10)
I think why persons who having AIDS seemed to feel embarrass with community people, because
of the psychological burden as result of their previous behaviors. Actually our religion thought
us not to do talking or gossiping of bad behaviors of other people, even someone who already
passed away… (G23)
DISCUSSION
Having HIV infection was viewed as a reality that had happened and could not be avoided,
unless being accepted with care. Care, in the informants’ view covered utilizing all beliefs,
values, and efforts to maintain health and well-being while being with HIV infection. The theme
“understanding the meaning of illness as a consequence and as a test of patience” reflects the
belief of Islamic beliefs, which all effects were resulted by a cause and illness, suffering, and
hardship as a test of patience. Previous studies documented the influence of faith in believing in
God in dealing with HIV/AIDS impact (Cotton, et al., 2006; Maman, Cathcart, Burkhardt,
Ombac, & Behets, 2009).
Although the reality of being an HIV-infected person could not be avoided, it should not
lead to frustration or hopeless. The theme “beliefs and meaning related to caring“ which
consisted of six sub-themes; caring is doing good deeds, obligation of human being, sincere,
empathy, support motivation and encouragement, and providing comfort indicates the
universality meaning of caring as also found in the other culture. In this context caring meant
utilizing all of the endeavors while supplication to God for the best outcomes as
acknowledgment of human weakness without any help from God. Since God, the Creator and
Lord of all beings, is the central belief in Islam, gaining His blessing was viewed as essential in
Muslim life. The theme of doing good deeds which aimed to gain blessing of God mirrored the
firm belief of the informants in God. Kutty (2002) stated that blessing in Islam means mercy of
God which indicates His love and eternal salvation for the blessed ones. Islam is essentially
surrendering self totally to God by dedicating everything to Him. Thus, every single utterance or
deed that is begun in the Name of Allah and with the intention of seeking the pleasure of Allah is
considered blessed; likewise, each and every matter that is not begun in the Name of Allah is
considered disfigured. Doing good deeds and worship God is a mean to gain blessing of God.
Some examples of doing good deeds that are recommended by Islamic teaching were patience,
control over passions and desires, control over bad temper, prayer regularly, visiting the mosque,
reading the Qur’an, family gathering, concern for the community matters, etc..
Living with HIV infection is vulnerable to other co-infection diseases since the body’s
immunity was not well functioning. The nature of HIV illness has changed from acute-fatalistic
disease to chronic-manageable disease due to the advancement of the antiretroviral therapy. This
required PLWH and surrounding people develop caring practices to maintain their health and
well-being. Previous studies demonstrate various strategies were developed and practiced by
PLWH to maintain health. Eller et al. (2005) found six categories of self-care practiced by
PLWH; these were practicing complementary/ alternative therapies, talking to others, using
distraction techniques, using antidepressants, engaging in physical activities, and using
denial/avoidant coping. Gaskins and Lyons (2000) identified three categories of self-care
practiced by rural PLWH; they are dealing with rural issues, staying healthy, and the way of
taking care of oneself with HIV. Both studies were conducted in the secularized western cultural
setting in which the common people are less concerned about religion in their life.
Prayer (shalat), reciting Qur’an was selected as care practice to maintain connection with
God as the source of power. The informants were indicated to utilize Islamic religious practices
as a care modality in dealing with HIV-related problems. Utilizing religious practice, particularly
prayer, as way of coping with HIV/AIDS has been documented in the previous studies (Corless
et al., 2002; Cotton et al., 2006; Shambley-Ebron & Boyle, 2006). In the Muslim perspective,
prayer is an obligation and has become an integral part of Muslim life. Therefore, Islam
encourages Muslims to be patient and pray consistently while facing illness or when suffering
(Athar, 1999; Rassool, 2000).
Keeping efforts in health seeking modern medicine and health care professional assistances
remain to become the main option for most PLWH to heal their illness or relieve the symptoms.
Gaskins and Lyons (2000) reported that PLWH rely on physicians in the HIV clinic for their
treatment though some of them were bothered by feeling shame due to that some people would
then know they attended an HIV clinic. In addition, Irwanto and Moeliono (2007) reported that
of some 270 surveyed PLWH; of which about two-third visited health care services to obtain
ARV, VCT, and nursing care, several of them encountered barriers such as feelings of fear to be
known by relatives or friends, or fear of rejection by health care providers due to their HIV
status.
Comforting PLWH by visiting the sick and offering emotional and material support may
also be provided by the family, the health provider, and the community as a mode of care for the
PLWH. From the cultural context of the participants, providing comfort symbolizes expression
of love and affection that exists within familial, professional, and community relationships. It is
also supported by religious beliefs that teach them how to behave toward the sick person. Yaqut
(2007) asserted that honoring the disabled as well as the sick persons, meeting their needs and
comforting them is encouraged by Islam for the purpose of relieving their suffering. The Prophet
Muhammad (PBUH) used to visit the sick, pray for them, and consoled them, instilling
confidence in their souls, and covering their hearts and faces with happiness and joy. Family
caregiver provided comfort and emotional support for PLWH, as documented in a recent study
(Aga et al., 2009; Maneesriwongul et al., 2004).
Avoiding talking bad things of the sick or died person was viewed as a way of care for
dying and death persons. This belief can be illuminated by the Islamic perspectives toward death
and dying. In Islam, life is a journey through the world, and death is another journey through a
spiritual world to meet God (Athar, 1999; Rassool, 2000). The earth is described as a resting
place for the purpose of worshiping God and doing good deeds. Muslims value much on sanctity
of life meaning that all life is sacred and a trust from God, because it originates with God and
returns to God (Sheikh, 1998). Hedayat (2006) stated; Muslims traditionally defined death as
when the body grew cold after cessation of cardiac activity, despite it was based on more
empirical observations than on prophetic command. Attending to a sick person and/or the funeral
procession is highly recommended in Islam. Burial of the dead is a communal responsibility of
the Muslim community.
In the dying moments, Muslim visitors recite or listen to the recitation of certain key verses
of Qur’an, commonly “Surah Yasiin”. The rituals surrounding the time of death are commonly
consisted of making a will and testament, seeking forgiveness, reciting the Qur’an, reiterating
key beliefs (profession of faith by saying “La ilaha illa Allah wa-Muhammad rasul Allah” (there
is no god but Allah (God) and Muhammad is the prophet of God), facing Makkah at the time of
the death or head turn to the right if not practical, closing the eyelids, closing and/or binding the
jaw, and the body must be ritually washed, anointed, shrouded, prayed over, and be buried within
24 hours. Mourning in a loud voice and crying in a high pitch was prohibited by the Prophet
Muhammad (PBUH) (Sajid, 2003). It is a Muslim’s duty to offer condolences, comfort and
sympathy to the family and the relatives of the deceased. This strengthens the relationships
within the Muslim community.
CONCLUSSION AND RECOMMENDATION
This study highlighted the significant points of caring for and living with HIV/AIDS which
reflected cultural beliefs of Muslim community. Understanding meaning of illness which
consisted of illness as a consequence and as a test of patients indicated the beliefs of law of cause
and effect as underlined by natural law and religious beliefs. Beliefs and meanings related to
caring which consisted of caring is doing good deeds, obligation of human being, sincere,
empathy, support, motivation and encouragement, and comfort reflected the universality of
meaning of caring. Prayer, reciting Qur’an, keeping efforts in health seeking, visiting the sick,
offering emotional and material supports, and avoiding talking bad things of the sick or died
person were also reflected Islamic beliefs and practices related to caring practices. The results of
the study suggest nurses or other health care provider to consider and incorporate the beliefs,
values, and practices related to caring based on the cultural and religious beliefs and practice in
order to provide holistic and comprehensive nursing care particularly for PLWH and their
family.
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